There is a thing I do… I didn’t even realise I do it till another NKH Mum mentioned it. When I share photos of Kai, I only share the ones where he looks the most… normal. The most able. The least special needs.
Here is a photo I used in the last post:
As beautiful as Kai is, he doesn’t hold his head up. He doesn’t make eye contact, and his gaze is funny. His movements are spastic (and I use that word intentionally, because his movements are. They’re unintentional and uncoordinated).
I have a disabled baby. He’s beautiful, and I adore him, but I worry that I’m not painting a realistic picture of what special needs for us looks like.
And it’s hard, because internally I’m doing a funny balancing dance, and it’s got nothing to do with Kai in himself. It’s between the hope I feel, and what I want for his future, between the doctors whose jobs are remind us of the doom and gloom, the reality we see with Kai and the future we can see with other NKH kids.
Balancing the hope with the grief, and trying to bridge the gap with acceptance…. it’s not a graceful dance, this dance I do.
Thing is, the hope and the grief and all the ginormous emotions I’m feeling, Kai is still just Kai. He still does what Kai does, batting at his bells, vocalising his noises and vomiting all the things (Kai is currently poorly, poor babe).
And it’s hard sharing all the things. Bluntly, we share about Kai so openly because of his disability. We share for awareness, for other families who have NKH who are recently diagnosed, and we share so when we fundraise for a cure, people who know Kai might be more likely to donate. We share for reasons other than it’s best for Kai.
We are careful what we share, lots of movements are private, and everything we post here is delayed to give us time to process. At the same time, it’s a delight to share. To have so many people love my son, to be happy to see him doing well and support us when he’s not. You guys are the most supportive, and most wonderful. So it’s not a hardship to share (we obviously love gushing about how great our little guy is).
But I worry about the picture we paint. I don’t know – people that know us, and have met Kai… was he as disabled as you expected? How accurate is what we share?
I guess I’d like you to know it’s hard, this daily special needs grind. Parenting I think in general is hard. Sam and I made the decision just to get on with it, and we do, the best we can. But for every picture with the smiles and family walks in the park, there’s the vomit and panic at 2 in the morning with seizures, or were out of ng tubes or kai won’t wake.
Special needs, hey? It’s a whole different ballgame.